About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.
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A Life Opportunities Survey in the UK, conducted for the first time since 1997, surveyed 18,000 Britons and the findings on disability are striking. (As are the way the headlines about the survey are framed.) Bottom line? There are significant social obstacles to full participation in society for people with disabilities, leading to increased isolation in comparison with nondisabled people.

There’s a reason we talk about the social model of disability a lot: Because it matters. Many of the obstacles encountered by people with disabilities are created by society, yet disability is framed as a personal failing, and we are told that it’s our responsibility to get the inclusion and access we need, even when this is functionally impossible. One person cannot fundamentally rejigger the very structure of society; I, for example, cannot singlehandedly make sure that every new construction in the United States, or even in my own community, is accessible, because there are too many obstacles in the way. Access and accommodations are treated as a tremendous hardship and a nuisance and disability is framed as a burden: On society, on family members, on schools, on hospitals. This contributes to persistent social attitudes about disability that make it harder for us to achieve inclusion.

This doesn’t mean we should just give up. But it does mean that looking at disability solely from the perspective of a more personalised model makes it inherently difficult to address a lot of issues impacting people with disabilities. Making the focus on individuals, rather than institutions, also allows society to get a free pass on the barriers it creates; it’s our fault, evidently, that we are more likely to experience poverty, rape, sexual assault.

In employment, 56% of adults with impairments experienced restrictions in “the type or work they did or the salary they were paid” compared with just 26% of the general population.

This income inequality severely disadvantaged those with disabilities. Almost a third of households with an adult with impairments said they could not afford a week away on holiday each year – compared with just one in five of other households.

The survey also found that stress is a significant contributor in the lives of many people with disabilities, and when you are disabled, you are much more likely to be living on the edge. From the same article:

An unexpected bill of £500 would leave 38% of impaired adults struggling compared with 26% of their able-bodied peers.

“It is hard to know whether this is because people with impairments have reduced incomes or because they have higher living costs,” said Howe.

A disabled person’s disability will not go away just because the government has decided to save 20% on its DLA bill. The only change will be that those affected will have to fund the higher costs of living out of their own pocket. And these pockets are already threadbare. These cuts will affect a sector of society that the Disability Alliance UK states is already twice as likely to live in poverty as other citizens.

The Daily Telegraph took the ‘but disabled people really want to work‘ tack in its reporting, stressing the barriers to employment for people with disabilities and how this translates into increased financial hardship.

Almost half of households where at least one person had a disability (45 per cent) were unable to afford expenses or make loan repayments, compares to 29 per cent of households where no-one had an impairment.

Barriers to transport were also noted as a significant obstacle, whether people with disabilities are trying to get to work, socialise, or access an education. We are more likely to rely on public transport, for a variety of reasons, and we often encounter inaccessible transportation, essentially trapping us at home. This is a social obstacle, not a personal one. Wheelchair users, for example, are not inherently immobile; they are immobilised by inaccessible transit, by broken buses, by drivers who refuse to pick them up, by sidewalks that are not maintained.

The study also noted that some social obstacles, like high costs for housing and transport, impact nondisabled people as well. Addressing those barriers to access would benefit not just disabled members of society, but low income people in general. Making changes to work towards a more inclusive society, in other words, isn’t just about ‘the disability agenda.’ It’s about basic measures that would be helpful for all humans.

These results are being called ‘enlightening,’ which is what happens when you ignore people who have been shouting loud and clear for decades about barriers to social access, and when you decide that conducting surveys to learn more about the specific needs of the disabled community is so unimportant that you only need to do it every 13 years or so. These results are only ‘enlightening’ and ‘shocking’ to people who haven’t been paying very close attention.

Here is something you may not know about me: I enjoy hang gliding and paragliding. There are few things in this world I love quite as much as jumping off a mountain. It’s an experience that’s kind of hard to explain to people who haven’t done it, most of whom look at me highly askance when I say that I enjoy a sport many people think of as highly dangerous and also highly unsuitable for fat people. Au contraire to both beliefs, incidentally.

Here’s the thing. It’s awesome. There’s the ‘oh shit’ moment when you start taking off and realise there’s no going back and ack you really are jumping off a mountain and the ground looks very far away oh no what have I done and then you are soaring above the world. Sometimes birds cruise by and check you out. The view is incredible. It’s quiet and you can feel the wind on your face. It’s, well, the closest we can really ever get to flying, without a set of wings. It’s so glorious it almost hurts sometimes.

One of the attitudes I encounter a lot when I talk about people with disabilities and sports is the idea that we can’t do sports because of our impairments, or just puzzlement over ‘how it all works,’ despite the ample evidence for disabled athletics all around us. For those of us who are athletes or who are interested in sports, trust me, we figure out a way to make it work.

With hang gliding and paragliding, there are some definite accessibility issues; for example, sometimes you need to hike out to good spots, but there’s absolutely no reason full time wheelchair users can’t hurl themselves off mountains too, should they feel so inclined, and as is often the case with sports, people are often really interested in working together to make something happen for someone who shares their love of an activity. There are a lot of different options for people with physical disabilities interested in gliding, including both solo and tandem rigging with baskets or sports chairs designed (or hacked) for gliding.

So, when I was talking to a tandem partner the other day and he expressed skepticism about wheelchair users and paragliding…I went on a YouTube hunt to disprove him, and here’s what I found.

Be advised that these videos have a lot of background wind noise so you may want to mute them.

A video showing a wheelchair user’s paragliding start. The rigging is checked and someone runs behind the sports chair pushing it until the canopy swoops up and she takes off. The video concludes with a shot of the glider hovering over a wooded landscape, rapidly disappearing from view.

Another wheelchair paragliding start, also with an assistant to push the chair. The glider takes off halfway through, and the video zooms in to track the flier across the landscape.

A takeoff and landing, including some time spent in the air. Voices in Polish can be heard in the background.

A paraglider who chooses to transfer to a basket for flying. Assistants help get the flier in the air and he skims over water on what looks like a great day for flying before being joined by other gliders. Piping music with a strong beat comes on as he soars. This is an excerpt from the film Shared Flight.

I try to contain my gliding evangelism in the interesting of not boring/annoying people, but I will say that chances are high that if you’re interested in flying, someone would probably love to take you up!

We are asexual bloggers on the autistic spectrum who want to explore the intersection between autistic and asexual identities. The basis of this project is to have a conversation about our unique experiences being autistic and asexual without looking for a “cause”. We want to create a safe, non-judgmental space to talk about the issues that affect us. If you identify as asexual (or demisexual, or gray-a) and as on the autistic spectrum (diagnosed or not, AS, autism, PDD-NOS, NLD), you are invited to write a blog post for this project. If you are not asexual and autistic you are welcome to contribute provided you focus on the issues experienced by this particular intersection. The scope of the project is general, and open to any experiences of being autistic and asexual.

However, please keep in mind that asexuality here is to be discussed as a sexual orientation in its own right, not as discussion of the desexualization imposed on autistic people by mainstream culture.

Sculptor Steve Eastwood is disabled as a result of a stroke at 19. Initially the prognosis for recovery was poor, and during his lengthy period of time in rehabilitation, he was exposed to pottery and started exploring sculpture. Today, he produces sculpture and also teaches a pottery class for disabled students.

Here’s some of his work:

‘Angel of the Midlands,’ a sculpture done in limestone.

‘David and Goliath,’ a resin casting.

And a segment on him, done by the BBC. It’s a bit patronising, especially at the end, but I thought some people might be interested in seeing him at work in his studio:

Way back in the dark ages of the Internet, I had a massive bookmarks file. And a few times a day I would go through bookmark by bookmark (this was before the heady days of ‘open all in tabs’) to see if those sites had updated. Then, people started generating feeds, and my whole life changed. Instead of laboriously checking for updates by hand, I could load those puppies into a feed reader and read at my leisure.

Massive time saver! Almost everyone I know these days uses a feed reader because it’s just not feasible to keep up with this stuff any other way. I heart my Google Reader very very ferociously (it’s in my quick access bar). There are numerous other RSS readers out there, of course, including desktop versions which look pretty neat. (I fear change so I will never adopt them, but I sure will comment about how purdy they are!)

But there are also some disability-centric reasons to want to use feed readers, like being able to control how content appears when it displays to make it readable. There are a lot of sites I just plain will not read because they are not just inaccessible, but they actively resist accessibility requests. Some people are less bullheaded than me and really want to be able to read what someone has to say even though that person says it in eight point dark purple font on a black background with random flashing animations. RSS makes that possible; you can adjust it to display however you like it best et voila, you’re happily reading again! The ability to file stuff to read later is also very handy for people with limited energy. Basically, RSS=accessibility win!

Which is why it really, really pisses me off when people intentionally break RSS feeds.

Perhaps the most obvious offender is truncation of feeds. I know a lot of sites that do this and I’ll tell you right now, when sites start truncating their feeds, I unsubscribe and stop reading. There are a lot of reasons why people truncate feeds and I understand the arguments behind it (it can prevent scraping, for one thing, and some people are worried about ads and pageviews), but I don’t support it. And in fact a lot of people argue against it, arguing that truncating feeds can actually cut down on traffic and make people feel like your site is not user friendly. I’d be interested to see some studies on traffic (and I suspect some commenters will have links for me!).

And, for some people with disabilities, truncated feeds means they can’t read your content. Not the stubborn people like me who won’t read you if you truncate, but the people who are using your RSS feed because they can’t access your site. If you’re going to make an inaccessible site, you might want to consider at least leaving your feeds whole so disabled people can read it. Unless you don’t give a shit.

Fixed fonts, images, and colours. One of the greatest things about an RSS reader is the ability to completely configure it. If you need white sans serif fonts on a black background, you can do that. If you need text magnification, you can do that too. Using RSS is awesome for this and it’s a terrific accessibility tool in that sense. That is, until people force specific fonts, colours, and sizes with HTML. I’d pull an example for you from my own RSS so you know what I’m talking about, except that I don’t subscribe to sites that do that. (I told you, I’m stubborn.)

A lot of people use HTML this way and it really pisses me off. They will often say pompous things about ‘artistic integrity’ and ‘thinking about design’ but, in fact, if you are a good web designer, you should be able to design a site that looks good at any magnification, not just in 10 point or what have you. In RSS, this is really frustrating, because your settings usually can’t override the imported text. Consequently, you end up with annoying things like vanishing text, etc.

Embedded ads. I understand why people feed ads to RSS. But I wish that a little bit more thought went into them, because, guess what, flashing ads in your RSS reader are as problematic as flashing ads on a website. So far I don’t think anyone has come up with a method for making interstitials that work in RSS, all thanks be to ice cream, but I suspect it’s coming. I use pretty aggressive ad blocking and even with that I encounter ads in RSS. One animated ad can shut down my brain for a surprisingly long period of time and I freely unsubscribe from sites that inflict them on me.

Images without alt tags, embedded videos lacking subtitles or transcripts. Guess what! They’re annoying on your website, and they are also annoying in your RSS feed! And by ‘annoying’ I mean ‘significant barriers to accessibility that inform disabled users they are not welcome on your website.’

RSS, as we know, stands for Really Simple Syndication. Make it simple for your disabled readers: Feed plain, full text, reject flashing ads, and commit to making image, video, and audio content accessible. This angry cripple, for one, will thank you.

Here’s a completely bizarre policy move for you: Planners of the 2012 London Olympics announced today that a request to allow disabled ticket holders to use the games lanes set aside for athletes and dignitaries will be turned down. 100 miles (161 kilometers, if you must) of roads are being set up with a prioritised scheme to move official Olympics traffic along1, and disabled drivers don’t get to use any of those, although they might have benefited from the accommodation, avoiding the stress of traffic or inaccessible public transit.

The reason?

…it would not be possible to distinguish between bona fide ticket holders and disabled drivers using the lanes illegally.

That’s right. Because there’s a possibility that a person with a blue badge might use one of the games lanes without necessarily holding a ticket to the games, the organisers have decided to just go ahead and bar all blue badge holders from the lanes. This reminds me of a lot of the ‘fraud prevention’ policies when it comes to disability benefits; everyone’s got a passel of stories about ‘benefits cheats’ or people who use placards without ‘really’ being disabled, and thinks governments ought to move the earthto prevent even one person from falsely claiming benefits, even if the expenses of programmes aimed at addressing fraud far outweigh the payouts in terms of catching people.

We talk about placard panic here a lot, and there’s a reason for it. The media likes to devote utterly absurd amounts of attention to the idea that there are scores of people out there using disabled placards to get away with sneaky sneaky things, like parking closer to the grocery store. There seems to be a very common assumption that a car with placards should be viewed with suspicion because the driver is faking or someone is using placards for a family member of any number of other things, and the level of parking and driving policing that goes on in the media while ignoring other stories of far more importance and relevance is pretty breathtaking. This, of course, reinforces social attitudes and encourages media consumers to also get involved with placard policing.

It’s things like that that lead to decisions like this, where out of fear that a handful of people might abuse their disabled placards to take advantage of the dedicated lanes, people decide to just bar all disabled drivers from those lines after a reasonable request for accommodation. Including, I’m assuming people attending and competing in the Paralympic games, if the policy about the games lanes is taken to its logical conclusion. Which is, uh. Yeah. Talk about throwing the baby out with the bathwater.

Caroline Pidgeon, quoted in this article, puts it well:

When less than one in four Tube stations is wheelchair accessible it is appalling that the ODA have ruled out such a modest proposal.

So, basically, what organisers here are really saying is that they think disabled people shouldn’t bother attending the Olympics. For some people interested in attending, I’m sure that getting to various events was a concern, and being able to use the games lanes would have made it easier and more possible. Have an interest in sports? Too bad. Your kind are not wanted here. Which is interesting, since the organisers have indicated they are interested in accessibility issues; for example, there’s a discussion about making volunteering accessible, and their website has an accessibility statement. I guess accommodations only go so far, eh?

Methinks either the right hand knoweth not what the left hand is doing or someone has some seriously confused priorities.

I would note that Londoners are already not very stoked with this idea; congestion is a serious problem in the city and many people are concerned that the Olympics will make it functionally impossible for people who actually live and work in London to go about their business. This has been a problem for other Olympic hosts, as has the very high cost of costing compared to limited returns, but that’s a different kettle of fish. ↩

Pity Jeannette Catsoulis. This poor New York Times film critic recently faced quite a conundrum when she was sent out to review Me, Too, written and directed by Álvaro Pastor and Antonio Naharro. I’ll let her tell you about it:

Fiction films with disability as a central theme (especially those that feature disabled actors) are not only tricky to assemble but also minefields to critique. Praise can sound patronizing and criticism cruel, the disability casting a bulletproof cloak of political correctness around the entire project.

I always love it when people make sure to bring up ‘political correctness’ in this context, because it’s such a nice little codephrase. The art is suffering! It’s because of them! Those politically correct people over there. A poor critic can’t even talk honestly about something without fear of being harried by a horde of angry crips. I know, I’m sniffling too.

Now, criticism in the sense of art criticism is a bit different than the type of critique we tend to focus on here, which is specifically analysing the depiction of disability in art. My discussions about, for example, Covert Affairs focus not on the quality of the show (terrible) or whether I think it’s a successful piece of art (no), or even its place within a larger artistic context, but specifically on how disability is handled. And obviously, what we do here is also aimed at a specific audience, people interested in talking about disability in art and pop culture, rather than the general community.

I say this because I don’t want to conflate what I do with what Catsoulis does; her job is to look at works of art and criticise them as creative wholes, considering their influences, the genre, similar works, the history, and a myriad of other topics. This is not a sour grapes ‘I could do this better than her’ post, because we do two different things. That said, I don’t have very much sympathy for her. I think that good criticism stands for itself. If she’s being attacked for being ‘patronising’ or ‘cruel,’ she’s doing something wrong. Like, maybe her reviews actually are patronising or cruel.

I’ve read a lot of art criticism in my day, including critiques of pieces featuring disability. Those have indeed included discussions that were clearly patronising along with evaluations that were needlessly cruel. But they’ve also included good, solid criticism that actually engages with the work and tells me something about it, coming from people who don’t fall into the trap of only thinking about the disability and the ability status of the actors or creators. It can be done, I know, because I’ve seen it, and I enjoy reading it, whether the critic is shredding the piece or praising it.

Her attitude suggests that critics shouldn’t engage with works involving disability, and that if they do, they should not be honest. This does a service to absolutely no one. People with disabilities are just as interested in good criticism as everyone else. We make decisions about the art we want to consume on the basis of a broad assortment of characteristics, including things like critical response, and we don’t regard works featuring disability as inherently unassailable and would like to know, for example, if a film is just bad and we shouldn’t bother going to see it. Disability is not a free pass to do whatever you want in a creative work and that’s an attitude we spend a lot of time pushing back against.

I’ve noticed this attitude popping up in a lot of areas of media and pop culture. People are acting like it’s not fun anymore because of ‘political correctness,’ implying that a bunch of humourless people with no appreciation for art and culture are running around destroying creativity as we know it. Apparently, asking creators to stop relying on tired tropes and poor depictions of, say, disability, is ‘ruining art.’ Engaging with common tropes and the history of those tropes in art and asking why they keep appearing is ‘politically correct.’ Now the critics are joining in to complain about how legitimate complaints from people who don’t like hackneyed ‘criticism’ of the way their lived experience is portrayed is ‘ruining things.’

The snide remarks Catsoulis added to the top of her review didn’t really add anything to the discussion, other than serving as a warning that I shouldn’t trust her as a reviewer when she’s discussing works where disability is involved.

The first was that a greater percentage of the population understands the neurobiological origins of mental illnesses. Not only do people have a better understanding of the origins of mental illness, but they are also more likely to recommend treatment for the people described in the vignettes. People support services for individuals with mental illness, in other words, although it’s important to note the publication this appeared in; it’s clear that these ‘services’ are heavily skewed towards psychiatrisation, and it’s also important to consider that this can correlate with increased pressure on people who choose not to pursue treatment.

The second thing they found was that although people understand mental illnesses better than they did before, there hasn’t been a significant change in terms of attitudes about mental illness. Despite social campaigns organised by a number of groups, social attitudes about mental illness are primarily negative and people continue to hold a lot of false beliefs about mental illness.

People understand mental illness better, but it hasn’t changed the way they think about people with mental illness. Given that 20% of people in the US experienced symptoms of mental illness in 2009, this is a disturbing finding. Many of the respondents probably had mental illness themselves, though not necessarily the illnesses discussed in the study, or know some of the one in five people who experience mental illness in the United States.

As the article itself says:

Public attitudes matter. They fuel ‘the myth that mental illness is lifelong, hopeless, and deserving of revulsion.’ …Attitudes can translate directly into fear or understanding, rejection or acceptance, delayed service use or early medical attention. Discrimination in treatment, low funding resources for mental health research, treatment, and practice, and limited rights of citizenship also arise from misinformation and stereotyping. Attitudes help shape legislative and scientific leaders’ responses to issues such as parity, better treatment systems, and dedicated mental illness research funds.

I write a lot about pop culture, here and elsewhere, both because I love pop culture and I think it’s important. This study reminds me of the information about mental illness that people absorb through pop culture consumption. What people learn about mental illness from pop culture is that it is scary and that people with mental illness are frightening and dangerous. But, ‘they’ can be controlled with the use of medication. Both of these attitudes are clearly reflected in the study, which tells us that more people support treatment while still feeling negatively about mental illness.

The increased understanding of the neurobiological origins of mental illness can be attributed to a lot of things, I suspect, but one of them may well be the popularity of mental illness storylines on medical dramas. House, for example, often uses mental illness and includes expository scenes with (some) medical information. This, along with Dr. Google, results in a lot more understanding about the workings of the mind. On the surface, this might seem to be a good thing, but not when it fails to be presented with a shift in depictions of mental illness.

It’s all well and good for people to learn that, for example, people cannot control or prevent the onset of schizophrenia, and that people with mental illness aren’t at fault for what is happening in their minds any more than people who have asthma are at fault for having difficulty breathing. This is an important thing to convey to members of the public. But when it’s paired with a storyline involving violence or deceit on the part of the patient, it still leaves people with the impression that mental illness is bad. It might not be someone’s fault, but people are still bad because they’re mentally ill.

This is why we talk about things like the depiction of mental illness in pop culture: Because people take things away from what they engage with and they apply those things to their larger lives. Someone who learns about mental illness primarily by watching, say, House or Grey’s Anatomy may learn more about the medicine behind mental illness, but doesn’t take away anything new about the human beings involved. When TV shows tell us primarily that mental illness is a frightening unknown that can be controlled with medication, that doesn’t do much to break down social stigma.

Campaigns attempting to destigmatise mental illness have used a variety of creative media for trying to get their point across, from having people with mental illness enter classrooms to talk to students to running advertisements. If you ask me, they might be more effective if they went straight for the heart of pop culture; getting more mentally ill people involved in consulting when it comes to how we are depicted, publicly addressing stigmatised depictions of mental illness in pop culture, and challenging creators of pop culture to integrate more positive and factually accurate depictions of mental illness.

Problems getting prescriptions are only the end part of the process. In the US, most doctors won’t prescribe hormones without a patient having undergone a psychological consultation beforehand. At first glance, who would object? Hormones are powerful drugs that cause permanent changes and a screening process should be in place to make sure that you’re competent to make the decision to take them, right?

Just weeks ago, the Welters thought Olivia’s nurses would walk out the door when she turned 21. But in late October, the family joined a lawsuit filed by the family of another disabled man who had lost services, William Hampe. The state of Illinois then agreed that it would continue the level of services that Olivia had been receiving while the case goes through the courts.

“I have pain in my stomach, stabbing pains, in isolated areas,” Rednour added. “The sharp stabbing pain is all over my abdomen where this discoloration is, it’s in my arm pits and around my breasts. I have this dry hacking cough, my sinuses are swelling up, and I have an insatiable thirst.”

Rednour’s recent problems are a continuation of others that have beset her for months, including headaches, respiratory problems, runny nose, nausea and bleeding from the ears.

John Moore at The Denver Post: Oh, the disabled can pack a punch line (note, as you can see from the title, questionable language usage abounds in this piece and it also includes reclamatory uses of slurs like the r-word)

“Like many marginalized and disenfranchised populations, there is reclamation of power that goes with being able to take words that have been used pejoratively and use them to make people laugh,” said Hill. “While I do think the primary purpose of ‘Vox’ is entertainment, it also serves the secondary purpose of advocacy.”

But furthering understanding of the disabled, she said, requires an audience not made up entirely of disabled people.

“Like most movements, if you continue the conversation only among yourselves, you’re not going to get very far,” she said. “Women, for example, can talk about ending sexual violence as much as they want, but until they have as many male comrades in the fight with them, it’s not going to stop.”

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed, “75% of claimants are fit to work“, and carried on: “Tough new benefits test weed out the workshy”.

I live in a small town, which is something I both love and hate, at varying times. (Ask me how I feel about it this time tomorrow.) One of the consequences of living in a small town is that everyone knows everyone else’s business, or thinks they do, which can amount to the same thing. If you’re, say, disabled and queer, a lot of people will talk about that because they think that’s okay to do, and a variety of colourful and entertaining rumours will circulate as a result.

One thing people around me seem to think is really bizarre is my desire for privacy. I ask that people not talk about my disabilities or my general health with other people, and this is rarely respected. Thus, I hear through circuitous ways about the strange things are people are saying about me, because in the small town game of telephone, someone mentioning that I looked peaked in Harvest Market on Friday will turn into me being taken into the ER in convulsions by Sunday night. You can imagine what happens when people have actual medical information about me.

What people usually say when I say ‘hey, I would really prefer that you not disclose information about my disabilities or my health to third parties’ is ‘oh, but it was just a small thing.’

Except that there is no such thing as a ‘small thing.’ People who know what medications I’m on, for example, could look those medications up and find out what conditions they are commonly used to treat. Thus, someone saying ‘oh, I saw s.e. at the pharmacy the other day picking up some [prescription drug]’ is not disclosing a small thing. That person could be providing highly compromising information, actually, because once people go home and look it up, they encounter a lot of misinformation and they map that over to me. Maybe I’m not even taking the drug for the reasons they find on WebMD, but they’ll decide I have [disorder] without talking to me or asking me for any information (probably in awareness that if I haven’t told them, there’s a reason for it) and since there’s a lot of stigma about it, they’re not going to view me the same way. They won’t interact with me like they used to. They will think I’m unreliable and untrustworthy. Despite years of evidence contradicting these beliefs, that’s how they will start thinking of me.

People in small towns squirrel away information and they revel in having secrets that can be teased out of them. How often do I have conversations with people where they talk about other people and they say ‘well, you know, ever since the diagnosis, she hasn’t been the same’? What they want me to say is ‘ooooh, what diagnosis?!’ Or they want me to say ‘oh yes, I know, she has cancer, it’s so sad.’ What they don’t expect is ‘I’m not really comfortable talking about that when she’s not around, can we talk about something else, please?’ I don’t play the game of secrets and this tends to make me rather unpopular, because I’m not interested in using information about other people as a tool for entertainment, amusement, or simple social advancement.

In a small town, there is no such thing as a small thing. Not when everyone knows each other, not when identifying details are pretty easy to figure out. If a doctor mentions treating a patient with a distinctive tattoo or an unusual name, everyone’s going to know who that person is. The doctor doesn’t have to say ‘I’m treating John Q. Public’ for people to know. Most care practitioners up here are aware of that and they are really careful when it comes to protecting the privacy of their patients, but the same doesn’t extend to people who are not doctors, who can gossip freely amongst each other.

I hear the strangest stories about people, the result of compilations of ‘small things.’ Many of these stories I know to be patently untrue and others are unverifiable unless I talk to the person, which I usually don’t want to do because I often don’t know the person very well and also because if that person hasn’t volunteered this information, it’s not my business. In some cases, very rarely, they are true, but I’m still not interested in discussing them, because, again, not my business. People seem absolutely astounded when I suggest that they stop spreading rumours about people or when I say that I’d really prefer that they not discuss personal medical information involving anyone other than them.

I’ve had people tell me I ‘obviously don’t care about [person]’ for asking them to stop talking about that person’s disabilities or medical conditions. For suggesting that, rather than speculating on the ‘small things’ and what they could mean, breaching privacy, faith, and trust with their supposed ‘friends,’ they shut up.